The hidden simplicity of diagnosing Complex Regional Pain Syndrome

CRPS, formerly known as Reflex Sympathetic Dystrophe (RSD) or Causalgia, sometimes called Sudeck’s Atrophy, and elsewhere called Neuroalgodystrophy (among other things), is confusing to label accurately because it’s not only complex, but it’s a disease of exceptions.

In many cases, pain is not sympathetically maintained; hence the deprecation of the name RSD. Atrophy doesn’t always happen; hence the deprecation of the name Sudeck’s Atrophy. And, most importantly, it is not a psychogenic disease[1], making the name neuroalgodystrophy, or the presumptive diagnoses of somatoform disorder or conversion disorder, irrelevant — not to mention prejudicial and counterproductive.

The earliest professional description in the historical record of a syndrome like CRPS occurs in the notes of Ambroise Pare’, groundbreaking surgeon and father of forensic pathology, as well as court physician of French king Charles IX in the late 1500’s[2]. Between North America and Europe, further descriptions and case studies appeared over the next few hundred years[1]. Consistent diagnostic characteristics were described by neurologist and American Civil War battle physician Silas Weir Mitchell in the mid-1860’s[3], who saw many hundreds of cases due to the peculiarities of the ballistics used in that war.

Thus, CRPS does not qualify as a “disease of modernity”, the cluster of diseases characterized by distributed pain, lethargy, memory/cognitive impact, and immune dysfunction. In fact, it predates the Industrial Revolution by a couple of centuries. CRPS has also been described in animals[4]. In short, there is no compelling evidence that CRPS is anything other than a disruptive companion of mammalian neurology, which has become more recognized as humans are living longer despite impairments, and describing illness better.

Various attempts have been made to create coherent diagnostic criteria. Sadly, they’ve been written and published by physicians, who rarely have the distinct skillset of information architecture — but who do have lots of practice using double negatives, complex constructions, and the passive voice. The inevitably garbled paragraphs which result from using this professional style to describe the diagnosis of Complex Regional Pain Syndrome come across, however unconsciously, as sloppy and ill-defined, regardless of the underlying information.

After much thought and research, this blogger’s view is that the most recent (2013) IASP diagnostic criteria[5] may not be perfect, but are currently the best we have for all-around clinical use. Therefore, in the interests of obviating (that is, doing an end-run around) the confusion, this blogger — who is an information architect — has turned the diagnostic criteria into a simple checklist.

Once completed for each patient, this checklist not only delivers a yes/no for CRPS diagnosis, but also highlights which features of that case are salient, and where treatment of that person should probably focus.

Full-sized PDF format is downloadable and available for free under Creative Commons Share-Alike Attribution International licensure. In other words, wherever you are in the world, you are free to use and alter this, copy it, pass it on, even charge for it — as long as it contains a link to this page (biowizardry.info) or its companion page, livinganyway.com, and you don’t try to claim or assert IP rights. It’s appropriate to pass it on as freely as it’s offered to you. Use it in good health — whenever possible.

Sad thing for years workers compensation boards use the dignostiic check list, and if you do not present that day w the symptoms you are denied, despite having all symptoms st various times. Search WCAT appeals BC, recent years CRPS has been accepted more, worksafe BC did a study review a few years ago. Bogus. Thak you.

Yes they do this, *even though* the come-and-go nature of the symptoms is discussed in the Budapest protocols! This is why I detest the term “evidence-based medicine” which (like the Blue Skies Initiative or No Child Left Behind) is, in reality, utterly opposed to the meaning of the words. It’s used as an excuse to misinterpret and cherry-pick features described in the scientific literature, and treat the smallest possible subset of the real patients — the subset that happens to match their statistical model. It’s a travesty of care, and a devastating assault on the ill, wrapped up in science papers like wrappers for rotten fish.

BC is so beautiful, but its health administration is nearly as bad as the US — and that is saying a great deal!

I do appreciate the simple checklist but what it fails to include are details regarding the CRPS (NOS) Diagnosis for those who may not be “currently presenting” symptoms but have in the past. This part of the protocols is pretty much ignored but is of great importance when “reassessments” occur years past the initial onset of CRPS

This questionaire only addresses the current criteria for current diagnosis, which is a pretty specific slice of the broader reality. I don’t feel qualified to go beyond. I would LOVE it if you could leave a comment expanding on the idea you discuss below. I don’t even know about these criteria you mention, and I was pretty sure I’d read the protocols cover to cover. Might have to go back to that!

Here’s my understanding of the current approach as I’ve discussed it with my physicians and consults. According to the current standards, there is no such thing as “former” CRPS, only CRPS “remission”, which is so widely considered both very good to have and very unlikely to get, it doesn’t get studied much retrospectively. The medical science is geared toward treatment rather than understanding the natural history of disease, because withholding treatment once you *have* a diagnosis is so horrbily illegal and unethical, and (from a clinical point of view) diagnosing something that no longer shows up is, necessarily, an exercise in imagination because those signs and symptoms which existed before can not now be assessed.

(To learn more about the history behind witholding treatment to study the natural history of illness, google the “Tuskegee Experiment”, now widely considered one of the worst stains on medical history’s lab coat.)

Chronic pain care is a palliative discipline, meaning that the patient is not expected to recover. All we can hope for is a reprieve. This makes it very hard mentally for the practitioners who go into it, because they don’t get the kind of successes other docs get. For those in a similar position, I’d suggest keeping copies of your records from that time, including your own notes, journal entries, emails, whatever, because your personal records matter as evidence, even if they aren’t useful to the practitioner right now. Should something similar arise in the future (heaven forbid), you’ll have those to slap on the doctor’s desk for context and, we hope, help you get better and more appropriate diagnosis, care, and treatment.